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Slow and Steady

From Kate:

Since being admitted, the mantra for Getty has been slow and steady. When we abruptly try something, Getty’s recovery seems to take a step back. I know how important routine is for Getty and once you start changing her environment she can get a little overwhelmed. Don’t get me wrong, this girl likes adventure, but the fun kind. Take Norman the gull. He didn’t fly in her face and scare her, he just calmly flew near her and hung out. Getty’s closest friends come over to talk to her in a calm voice and she reciprocates with a smile or a soft coo. She doesn’t like abrupt situations, which is not ideal staying several days in a hospital.

A hospital can be a jolt to anyone’s system, let alone a child’s. The alarms, the beeping, strangers coming in and out of the room and the relentless need to poke, monitor and assess Getty has really taken a toll on her. We have been very worried that she hasn’t been getting the rest she needed to bounce back from this sickness. So we found a solution. Operation “Get the Hell Out” commenced yesterday. 🙂

It is our nice way of saying to the staff that she needs absolute silence and rest in between breathing treatments. So the RT and the nurses bundle their care at the same time, which leaves Getty with a good two and half hours of rest. And she uses every second of it. It also gives Mark and I the chance to get in a little nap and have the reassurance that no one will bother any of us.

The staff has been very respectful of our wishes so far and we certainly appreciate it.

So as I write this Mark is passed out on a pull out bed. I have no idea how he is sleeping the way he is only to suggest that pure exhaustion has left him with his body all contorted, yet he is sleeping like a baby. 🙂 Getty is also sound asleep and getting the rest she needs for the next demanding treatment at 8pm.

Sure, we would love to go home right now. It would be amazing to be able to snuggle with her in our bed. I want her to be back in a familiar and safe environment. I know it will take time to get her where she needs to be in order to continue to thrive, but she will get there slow and steady.

I want to thank everyone for your prayers and well wishes. I think there is such power when many people are sending healing wishes. Mark and I read and re-read the comments. After Getty’s health scare, I needed to ground myself with positive words. I turned to comments made by so many of you to help me relax after such an insane few hours yesterday morning. So I thank you all so much. Knowing that people are thinking of Getty touches all of us.



Hospital Update 2 – Getting HORRIBLY Worse Before it Gets Better

From Mark:

Up until now, the Kaiser PICU staff has been great. Then this chump respiratory therapist (“RT”) came into the picture.

Kate and I have been great with all the RTs and nurses during our stay, but there was something odd about this guy. We couldn’t put our finger on it, but something was just not right with this guy. We each felt it in our bones the minute he walked in the door.

Kate went to bed in the parent bedroom, and I did Getty’s midnight respiratory treatment with this RT. I felt nervous the whole time, unlike the nice level of comfort I have had with all the other RTs helping with Getty’s care.

Kate and I take the lead in the treatments because we know our daughter. The RTs follow our lead during Getty’s treatments. Given Getty’s fragility in certain respects, if it goes any other way, we know Getty could be in deep trouble very fast.

We got through the midnight treatment just fine as I lead the treatment and coached the RT. I said good night to the RT with a verbal understanding he would wake me up at 4 a.m. for Getty’s next treatment. I went to sleep in the room with Getty.

The next thing I know, I hear an alarm. The RT failed to wake me up before initiating her 4 a.m. treatment, and he caused her to desat to a blood oxygen level of ZERO. That essentially means Getty cannot breathe at all.

Kate and I knew of this risk, and that is why we always take the lead with her respiratory treatments and we never allow an RT to treat her without our full involvement. We know our daughter and we know how to prevent this very situation because we have had to rescue Getty from this very thing ourselves at home on multiple occasions, although in our hands, her sats have never been all the way down to zero.

We worked Getty back up to normal numbers. The RT explained how he started Getty’s treatments without me. As we started to get into it, Getty’s numbers dropped again. The nurse went to the bedroom to get Kate, and we worked to stabilize Getty. Kate, the nurse, and I literally saved her life from this buffoon RT.

Once Getty was stable, we chewed the RT a new one. We chewed out his supervisor. The head honchos came in later and wanted our side of the story. Apparently, the RT told them he didn’t know he was supposed to wake me up before starting the treatment. I explained that there is no way in hell we would ever allow anyone to treat Getty without our involvement. I also reiterated that I had specifically requested the RT wake me for Getty’s 4 a.m. treatment, and this is the exact reason I asked him to wake me up for the treatment and not half way through the treatment. We don’t know what happened to that RT, but they assured us he would not be back in our room.

When the adrenaline wore off, it was back to business for us. We have a daughter to fix.

I asked our intensivist to call Dr. Mary Schroth at university of Wisconsin, the leading SMA pulmonologist in the US. He generously called her and discussed Getty’s care. Dr. Schroth recommended changing up Getty’s care and treatments. Our intensivist modified his orders according to the input from Dr. Schroth. Thank you, Dr. Schroth!

Our regular pulmonologist came in to visit a little later. When he arrived, he saw that Getty’s treatments had changed. The conversation went something like this:

Pulmo: [befuddled] What are you doing?!

RT: We changed Getty’s treatments.

Pulmo: [defiantly] On whose orders?!

Me: Dr. Schroth.

Pulmo: [defeated] … oh.


The rest of the day went pretty well, and Getty spent quite a bit of time completely weened off oxygen. She has since been intermittently delivered low oxygen but she’s definitely better than she was a couple of days ago. We tried her completely off bipap, but she could only go 8 minutes.

The rest of the treatments went well and according to Dr. Schroth’s protocols. Today’s x-rays still show problems but improvement.

Getty gets 1.5 hours of full-blown respiratory treatments every 4 hours, as follows:

  • 4 sets of 5 coughs on the CoughAssist machine with oral and nasal suctioning after each set
  • 15 minutes in a vibrating vest that inflates around her and shakes all the crap around in her lungs
  • 4 more sets of 5 coughs with suction
  • 15 minutes laying in a decline (head-down) position to allow all the crap in her lungs to drain toward her throat (postural drainage), with medicated nebulizers as needed
  • 4 more sets of 5 coughs with suction to remove all the junk that was shaken loose and drained toward her throat

After the 1.5 hour treatment is complete, she gets to sleep for 2.5 hours. Then we wake her up and do it all over again. She likes watching Mickey Mouse during her treatments.

We are glad to be rid of that RT, and he rest of the Kaiser PICU medical team is wonderful. The RT supervisors changed the orders so we get the same RTs every time. No new faces. Our regular daytime RT is wonderful, thoughtful, knowledgeable, and takes very good care of Getty. We’re glad the nightmare is over, Getty is in capable hands, and is on the mend.